People just do not understand.....

erinhermes · 05-06-2009, 03:33 PM

Oh, hon, I am so sorry you are having to go through this. I am on 30 mgs a day of Paxil and it seems to be helping - you may want to ask about that.........

Are you on any meds to help with weakness? Pred? I know there is a lot of people out there who are very much against steroids, but for ME they were a life saver.........

This disease stinks, plain and simple. There are days when I scream and cry and throw things or eat an entire tub of frosting while crying, but they pass.....it will get better!

Do you have a local support group? You are NOT alone.....though you may feel like it. THere are plenty of us who KNOW what you are going through - sadly.......sigh......

Have you ever heard of IV IV? Plasma exchange? I know for me they were a huge help in getting some of my strength back......

Hang in there!
Big hugs!
Erin

Quote:

Originally Posted by Christy

MG BIO
June 2008 I began to experience sporadic light episodes of - double vision - slurring of words - trouble swallowing - breathing incorrectly - walking strangely - fumbling.

Went to ER (some family pressure) because I looked as if I had a stroke, although I was confident I had not because I looked well after a short rest. ER sent me home with instructions to see GP.

GP wrote scrip for potassium and suggested I see a neurologist. Three week wait for neurology appointment. Symptoms intensify radically. My computer and I diagnose myself with generalized MG while waiting the coveted appointment.

Textbook work-up including all possible tests took another two weeks. Finally, I received a definite Dx of non-thynomic generalized myasthenia and Rx for Mestinon (180 mg timespan ½ twice a day as needed). In October, I telephone Dr. office, request, and receive Rx for additional Mestinon (60 mg generic tablet ½ to 1 tablet per day as needed).

Most of the emotional issues of this disease have been on hold. Other huge family medical issues make my MG materialize small on quality of life scale. I am now justifiably depressed. (Because of this board, and your kind words to one another, I know I am not crazy just slightly depressed). I will be calling neurologist today for yearly appointment. Hoping there is an antidepressants ( Lexapro, Effexor, Cymbalta, Zoloft) drug that works well with Mestinon.

Those are the FACTS….
Theses are the FEELINGS ….
I have no energy to push through a task - if I do - I pay for 3 days. Food has become an enemy, walking more than a mile seems dim-witted, all responsibilities are much to time sensitive, vacuum cleaners weigh 200 lbs, heat is equivalent to immobilization, I now ignore things that were paramount a year ago. I continually feel alien within my own life, both physically and emotionally. Spiritually doing okay but feeling somewhat reminiscent of Jonah.

Wow, that was therapeutic to write nearly years worth of life changing events into a few paragraphs.

Thanks for reading …Blessings to all.
Christy,

redtail · 05-07-2009, 03:27 AM

Hi Christy,

welcome to the board!!

I'm on antidepressants, it helps me get through the tough times.

You say you will be calling your neurologist for your "yearly" appointment, I'm a bit concerned. With all your symptoms I would be hoping your neurologist would be trying to stabilize you a bit more. I know I still struggle with some of these things, but I would have thought you would need to see them a bit more often. Anyway thats just my thoughts.
Yes it does help to put things down in writing, I still come here and pour my heart out, it really does help
Kate

Maxwell'sMom · 05-07-2009, 10:45 AM

I was thinking the same as Kate. I see my neuro every three months, and during the times I see him every 4 months, I'm so giddy..yay.. and once, I went six months, and thought, Oh my word, this feels so good not to have another appointment so soon.
I can't even comprehend a year, and I must say, neither could my neuro....

.
Well, as you probably can tell, I'm so tired of medical appointments. I have too many of them. I use to say if I saw one more person with an "OLOGIST" at the end of their name, I was going to be seeing someone different, This time it would be someone with a "trist" at the end, as in, "Pychiatrist".
I mean, I see a Endrocrinologist, Neurologist, Pulmonologist, Cardiologist< two of those, ones an expert on Pulmonary hypertension, Nephrologist, and then there is the occasional Rhueminologist (sp?). I don't think, I've forgotten any one.
And they all want to see me every so many weeks right now. I feel overwhelmed by them sometimes.
So, the once a year thing, doesn't sound good, he may not understand that your symptoms are as bad as they are, please let him know if he doesn't.
Much love, and many hugs
Love Lizzie

erinhermes · 05-07-2009, 03:49 PM

A year is just waaaaaaaaay too long to go between appts. I have dx'ed for a yr now and still see my neuro 2 times a month. Granted, we are still trying to get things stablized, but it sounds like you may need help in that area as well

I hope you feel better soon and get the answers you need - as well as the meds!

Big hugs!
Erin

ras1256 · 05-07-2009, 06:41 PM

Christy,
Welcome to our forum!

One year appointment? Even as I was coming under control with generalized Myasthenia, I saw my neuro at most every 3 months. I didn't graduate to 6 months until it was obvious I was mostly controlled. Does the Mestinon as prescribed for you seem to control your disease? I'm surprised if it does with the symptoms you have described. Have you checked on other neuro's at least to get a second opinion, not on the dx but on your treatment?

I take Effexor ER for depression. It has an added benefit of giving a little energy, too.

I'm so sorry someone else in your family is struggling with severe health issues too. It seems there should be a limit! And emotional stress can be a big contributor to MG.

When my cousin died at a relatively young age of a sudden massive stroke I was lucky enough to already be in the hospital (getting my dx, actually), because I turned into a limp noodle after getting the news.

I wanted to say, you have such a gift for writing. Do you write in your career? If not, you should pursue that I think! Your writing, even just relaying your story, is very poetic.

I hope you'll continue to post. It does help to get some of this off your chest!

Big Hugs!

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